Hello everyone. My Name is Marc, and I recently stumbled across this site. I am 26 years old and I have been suffering from cluster headaches since about 2004. The first one I had was debilitating, it was horrible. I was just at the gym and on my way home and then it started, such a strange feeling, I started to drive home. The drive home was bad, the pain came on very slowly and luckily I got home just before it got bad. I collapsed on the floor in agony, my right eye had swollen over and so it begins....

I wont tell the whole story as everyone here knows how it goes, pain, embarrassment, unsureness, people thinking you have a strange migraine, (even though I am also a migraine sufferer and told them that the pain is totally different, stabbing instead of aching) but finally last year I was correctly diagnosed, as I came out of my last cycle.

The problem I now face is that the CH are changing. in previous cycles, although difficult to deal with, the CH's were at least dependable, I knew when they would come on and could prepare for them, but the last cycle and most definitely this one, have been been eratic. Previous cycles the headaches would come on at around 11:00am or 9:00pm, but my last cycle, they came on at sifferent times, mostly around 4-5PM, but some in the morning, some in the evening and some in the middle of the night, although 4-5 seems the most likely time, they were 50% or more random.

That was about 16 months ago and at the beginning of April, my cycle started again, but this time even more strange. Firstly since my current cycle started, the headaches have all been of very low severity, still debilitating of course, but I havnt had one really bad one (we all know the bad ones) secondly, there has been no time pattern. Thirdly I have had a lot of PFD, this is the most unusual thing, since during my previous cycles (usually lasting  around 8 weeks) it was unusual to get PFD's maybe 1 day per week might be without a CH. This week I have had maybe 2 days were I had a CH, same triggers, heat/exercise, but no where near as often as usual and I can comfortably exersize 3 times per week without the fear of a CH, and then when I do get one, it isnt too bad.

So basically im wondering if anyone else has noticed something similar? either the timing of the headaches, or the freqency or even the severity? what does it mean ect? Thanks in advance.

You say you have been diagnosed, so I'm curious as to what kind of treatment you are currently undergoing. I'd advise you to look through this forum as there are tons of really knowledgeable folks who have a lot to offer. I'd also suggest you read up on o2 and the Vitamin D3 regimen as it seems to have helped quite a bit of people, including myself.

I've had some cycles where the headaches came almost always at the same time, and others where they came all at different times. Such is the nature of the game.

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Do take a second and read this link, it'll give you the details to use 02 correctly. I abort in about 6-8 minutes, beats the old 90 minute rides!

Joe

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Thanks, I noticed the sumatriptan tablets tended to work if I took them early enough, like when I first felt the pain, or even occasionally as a preventative measure if I had a conference at work or something, but in general, Id say they were hit or miss at best. The doctors prescribed them to me when they were not sure what I was getting because apparently they can be used to treat CH and regular migraines.

I was once given injectables but I wont be doing that again. I had a bad attack one day and decided to try the injection. The pain from the CH was so bad I could barely focus on what I was doing with the injection, I managed to do it, and as soon as I pressed the button, the shock made me pull away. most of the medication dripped down my leg, the CH didnt go away, I started to feel dizzy and sick because of the injection, and I ended up with a big fat sore bruise on my thigh for the next 3 days. Ill stick with the tablets and 02 as soon as I get back, but I didnt know about the nasal spray, I will ask my doc about that thanks.

On a happy note, I have been pain free since I signed up to the forum 

Bob Johnson wrote on Apr 24^th, 2012 at 3:43pm:


I never blamed the med, I just said I wouldnt be trying it again any time soon, because I had a bad experience. If the day comes when the pain is so bad that none of the other medications work, Then I will indeed follow your advice and consult the doctor regarding the injections, having said that, it makes more sense for me to ask the doctor to train my wife, since in a heavy attack, the first thing I think about is NOT the correct procedure for injecting myself. Callico was nice enough to inform me of the nasal spray which I will mention to my doctor. Hopefully this and the oxygen will suffice.

wimsey1 wrote on Apr 25^th, 2012 at 7:34am:



Thanks Lance, I have learned a lot browsing the website, hopefully i will help in the long run.

On a separate note, I had a very strange one last night, it was while I was watching TV, the headache came on very slowly, and didnt get very bad at all, infact I was able to watch the whole program, the pain was almost non existant (but it was there) lasted about 20 mins and then went. This was possibly the mildest CH i have ever experienced. My eye still went slightly blood shot and I felt slight pressure in my face, but was really strange, I have never experienced such a mild one.

Every now and then I get an attack that sort of ramps up, then dies off before becoming really bad. I wouldn't read too much into that, however, as the next one is usually the real deal.